What to Expect With Primary Progressive MS
Now and Later
At heart and at home, an essential makeover
For Mimi, living with progressive MS means both a stubborn resistance and a
grudging acceptance of her ever-changing reality. Recently, Mimi reached a new
turning point in her life with MS. For the first time, she found herself on the
floor, unable to get up to her chair.
Panic set in. “I said, ‘Oh my God, I’m a disabled person!’” she recalls.
“There was this rush of vulnerability -- before that, it was always an anger
A dark depression followed, lasting weeks before lifting. In its wake, she
and her husband, John, are working on solutions to their newest dilemma -- no
more riding the now-dangerous chair lift to the second floor.
A new fully accessible ground-floor addition to their home in Virginia will
be an expensive but necessary project. Thanks to John’s efforts, donated
materials from local builders are coming in. And stay tuned: a “home makeover”
television program has even picked up the story.
“He went into ‘rescue mode,” Mimi says, referring to John sending out
hundreds of letters seeking help from friends, family, and businesses. “And for
once I let him,” says Mimi.
As in Mimi’s case, the paradox of having to accept progression while
struggling against it is at the center of life for thousands of people living
with primary progressive MS. Or as Mimi puts it, you have “to stay in the day
and find peace and gratitude with what you’ve got -- because you never know
when you’re going to lose that.”